Wednesday, February 15, 2012

Young Survivors-Fertility Issues

If you are a nurse, no matter how old and feeble minded you get, there are certain patients, certain situations that you have experienced in your career, that you will never forget.  Never.  I'm not just talking about the adorable and cute patients, or the ones you grow to love.  You will also remember the difficult patients, the ones with funny stories, the ones with sad stories, a certain smell, a certain feeling, all of the things that have taught you something somewhere along the way.

In this particular situation, I remember sitting with a lovely woman in her mid twenties who had an aggressive type of cancer.  She received her first round of chemo emergently in the hospital.  The large tumor mass in her chest (that was making it difficult for her to breathe) had started to shrink quickly after she received a dose of chemo.  I was meeting with her to discuss potential participation in a clinical trial now that she was feeling and breathing better.  I met her in our outpatient chemo clinic.

We sat together and reviewed the plethora of potential side effects that are listed in the consent form for the trial.  We talked about each side effect and the likelihood of it happening.  Then I would explain what we would try to do to help her get through certain side effects.  She was smart and asked great questions. Many of the side effects she had heard before from her doctor, prior to getting her first round of chemo up on the inpatient unit.   As we were nearing the end of the side effects discussion,  I got to the "reproductive risk" paragraph.  In one sentence I had to tell her that she needed to use appropriate contraception as the effects of chemotherapy on a fetus could be disastrous.  In the next sentence I had to tell her that the chemo that we were giving her to potentially save her life, could cause her to become irreversibly infertile.

This is always a hard thing to say, but it is especially hard to say this to a 25 year old whose whole life and dreams have been turned upside down in a 2 week period.  Usually when the medical oncologist sits down and explains the side effects of chemo, this issue is discussed.  So when it is my turn to discuss it with the patient, it still may be hurtful, but they have had a little time to process it.  I quickly learned from her reaction that it had not been discussed, or if it had been discussed, this was the first time she was really hearing it.

She was in shock.  And then she got angry. And then she cried and cried and cried.  She was absolutely heartbroken and who could blame her?

She went on to get pretty aggressive treatment.  I grew to truly admire her and love her.  Many years later I am happy to report that she is alive and well and healthy today.

BUT....later that day while driving home, I was like WTF!!  That was the day that it really knocked me over the head, that young survivors have different needs than our older survivors.  After attending many conferences and seminars over the years, I have heard many in our community discuss the same thing.  For years our #1 focus has been to save the life of the cancer patient and deal with long term side effects that arise in life later.  Now we know that we need to aim for cure AND quality of life for years to come for our cancer survivors.  We need to do a better job as health professionals for our young survivors.  Survivorship has definitely become an important buzz word in the cancer world in the past few years.

In my opinion, the best think about Lance Armstrong's book, "It's Not About the Bike; My Journey Back to Life" is where he discusses sperm banking.  He has horrific disease and he is about to be treated with a stem cell transplant.  His mother insists that he banks his sperm.  It's been years since I read the book, but if I remember correctly, his mother hears another patient talking about it and insists that Lance be allowed to bank his sperm.  This one well timed intervention allows Lance to become a father later in life.

The sad truth however is that Lance must have had the money to do this, or he had a fabulous health insurance that would cover it, as many of the patients that I meet do not have this as an option simply because they can't afford it.  Here's another ugly secret, there aren't a lot of health insurance companies that cover this for cancer patients.  So while not too many people come right out and say it this way, the very disgusting fact is that if you aren't lucky enough to have the funds to pay for it, you may be out of luck later in life when you want to start a family.

Lance and his wife at the time started FertileHope.  It gives some great information about the fertility issues that affect young cancer survivors.  It also offers some links and leads on where to seek help.  You can also apply for some financial assistance at this site.  It's been awhile since I have had anyone apply for this, but I think you can get some leads on discounted fees and rates, but the assistance used to be minimal.  If you have used their site recently, please update me!!

Bottom line:  it is cheaper for men.  Costs more for women as they have to take hormonal injections to stimulate the ovaries and those are pricey.  Also it is more complicated than what guys have to do.

Men:  fees associated with sperm banking plus a yearly "storage" cost to freeze.
Women:  cost of hormonal injections, egg extraction, fertilization if it's embryo,  processing, freezing and yearly storage costs.

Learn all about the processes for men and women and see what they have to offer for financial discounts:

If you are dealing with insurance companies, apparently there is a loophole that they use to weasel out of paying for cancer patients' fertility costs.  Read more about it at Fertile Hope.  Also, THE number one thing to remember when dealing with insurance companies.....APPEAL, APPEAL, APPEAL!!   This is of course hard to do when you are trying to preserve your energy for more important things during cancer treatment.

There is one other fund where you can apply for funds to assist you with fertility costs.  The Sam Fund.  It is an AWESOME fund for young survivors.  Application for financial assistance happens once a year in June only. You can apply for assistance for rent, to help pay tuition costs, fertility costs, medical costs, necessities etc.

If you are looking for a really good and honest charitable foundation to donate to that actually helps young cancer survivors, this is it.  More about this and a few other resources for young survivors in my next post.

Hope this helps!

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